Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Friday, September 26, 2014

There Are Better Ways To Keep Track Of A Portfolio

For years we've asked for an orderly, searchable portfolio of ALS research grants.  Trying to keep track of press releases with no accounting of outcomes is a poor way for donors and people with ALS to understand and evaluate the research portfolio.

We recently got a Word document with new research grants.

There are better ways, and they're not rocket science.  Try this.

Search and find.  Leave fields empty to find all.

And wouldn't it be nice if the projects were soon to be filled in with grant amounts and outcomes?

Online Database by Caspio

Click here to load this Caspio Online Database.

Thursday, September 25, 2014

Gone In Sixty Seconds

On Sunday, August 31, I posted the following in the comments area of the ALS Association facebook page:

Some folks who participate supportively on an ALS message board started a petition a few days ago to ask that the ALSA IBC windfall be substantially directed to research.  They asked me to post the petition here.  It now has over 1000 signatures that include PALS, CALS, families, friends, donors. The message is simple. Thank you for listening.

Within minutes (literally) it was deleted and I was blocked from commenting or liking anything there again.

Also deleted in the Sunday-night purge was one other posting that I had made days earlier  suggesting that an infographic showing what happens to a hundred dollar walk donation and what happens to a hundred dollar national donation would be most helpful.

ALSA certainly has every right and responsibility to manage its facebook area as it thinks best.

I still believe that both comments are worth some thought and archive them here.

Wednesday, September 24, 2014

Let's Rewind The #ALSIceBucketChallenge Tapes And Look Again

It's remarkable as you look up old ALS ice bucket challenge videos on YouTube or national media websites.  Most of the big ones mentioned donating to "ALS research" or "to find a cure" before flashing the link to donate at  The frenzy was built around that message blurted out by so many national celebrities and leaders.

Clearly, donor intent was ALS research.  One can't assume otherwise, especially since the online #IceBucketChallenge donation form had no gift-restriction options for weeks.

As the long-awaited plan for the funds is being designed and the fight against ALS moves into high gear thanks to the buckets of generous donations, we trust that donor intent for ALS research is being honored.

It's simply the right thing to do for many reasons.

Sunday, September 21, 2014

Was Basketball A Better Game Before The Shot Clock?

Were plays executed better?  Hardly.  Were more clever strategies employed?  No. Playcalling was quite the opposite.

Was football a better game before fans were allowed to see the play clock?  Not really.  Do play clocks spoil games?  No, in fact they have really added some ingenuity to modern football. Ask Peyton Manning.

Are golfers better when the PGA ignores speed-of-play rules?  Golfers never think they're playing slowly and they never seem have enough time to read a shot and rethink and rethink and change their minds and reread the shot.  Are slow players' shots better?  No.

Time taken for work and decisions has a bad habit of expanding to fit the time allowed, and the longer they take, the more "comfortable" the decisions become.

Sometimes an acknowledgement of extraordinary urgency can push someone to be creative and fresh and come up with decisions and execution that open new possibilities.

ALS is a disease of extraordinary urgency.  Time for a two-minute offense!

Friday, September 5, 2014

Easy Peasy Can Work

Yesterday I spent a day discussing patient engagement in clinical research with some impressive e-patients, healthcare professionals, and pharmaceutical company experts.  There is a critical area of mutual benefit, especially for patients with dire, untreatable conditions, that needs to be seized better.  It's a complicated problem.

People with ALS have a very short window of eligibility for clinical trials.  Trial sponsors have a problem akin to trying to catch fish in a very fast-moving river.  It's a constantly changing population and they're not in front of them for long.

After a good night's sleep, my mind is saying that maybe some of the solution isn't so complicated.

Here are two extremely easy ideas that could make a positive difference for both people with ALS and clinical trial sponsors --

  1. Start every ALS support group meeting with an announcement of all enrolling clinical trials within 500 miles.  Make it an institution.  That's the way every support meeting starts, everywhere.
  2. Put a 3-ring binder in every ALS clinic with a page for every enrolling clinical trial.  In addition to the old issues of People and Readers Digest, people with ALS and families can flip through clinical trials. PALS and CALS are actually at the perfect spot to talk to the doctors about anything interesting that they may see in that binder, even trials that are being conducted elsewhere.  It would be easy enough for a national organization to provide a fresh file to print and put into the binders weekly.

That's it -- two simple, easy ideas, and they don't take buckets of money.

Every day wasted filling a clinical trial is as important as a day of lab work or a day of data analysis or a day in the FDA approval process.  Every day is precious.

Thursday, September 4, 2014

This Is Not A Wish List

Yesterday a man with ALS asked some important questions.  We have so much to do.
"What topics are most urgent!? What needs to be discussed?"
Today's blog has my two-item response, but first, I had to find the right picture.  I didn't want a picture of a wish list.  These are not wispy dreams.  These are important. They can and must be delivered.  I rejected pictures of to-do lists. Those make us feel good when we cross off the trivial and recycle the important things.

This is a must-do list.

1.  The Medicare CMS handling of Speech Generating Devices is urgent and must be fixed immediately.   Current policies and execution hurt people with ALS and the American taxpayer.  We must fix this.  Now. It should never have been recycled on to-do lists for the last year.  It belongs at the top of a must-do list. Today.

2.  Now more than ever we need a good accounting of all ALS research grants made by our grantmaking organizations.  Nowhere is there a good, searchable list for donors (or for taxpayers or for scientists, for that matter) to see grant dates, amounts, subject matter, recipients, and outcomes.  We don't need cherry-picked project announcements and accounting by press release.  We need an orderly portfolio of the buckets of investments and outcomes. Yes, now.

That's it.

That's a two-item must-do list.

No wishing.  No putting things off.  No prioritizing until we get nothing done.

We must do these two things.  Now.

Wednesday, September 3, 2014

We Need To Press Medicare CMS Regarding Speech Generating Devices

Yesterday's article in the Washington Post and the related, delicately worded statement by CMS on their
policy on speech generating devices drew a lot of insightful comments online.

In addition, a relentless advocate for those with ALS who also knows a lot about these devices submitted a very informative letter to the Washington Post.

With her permission, I include it below.  I hope that the press will press for more information.  This is far too important to be glossed over with spin from a government agency.

Almost simultaneously with an op-ed piece by Steve Gleason on the importance of technology and communication for those diagnosed with ALS and other physical disabilities, the Health & Science section of the Washington Post, published a statement from Medicare regarding speech generating devices. 
As a volunteer advocate for people with ALS, I can tell you unequivocally that the statement they made is not true. 
I realize this is a bold statement to make, but since April 1, 2014, CMS has been denying as well as requiring manufacturers to remove all software and internet capabilities from the devices or they will not be covered for payment. 
One such distributor is Eyegaze, Llc. Feel free to contact them and inquire as to what they are now permitted to ship. 
I have been trying to help people with ALS obtain these communication devices for many years and the sudden change as of April, has truly affected the lives of people with ALS in a detrimental way. Many are losing their will to live as the speech generating device they now have is a very expensive alphabet box. No access to even save their sentences or manage their finances via internet.

I'd just like to note, there is no cost savings to Medicare by implementing these new rules. As a matter of fact, it is more costly due to the administrative costs they now must carry. The device costs exactly the same as it used to, except it simply has been stripped of its capabilities to add software or to access the internet.
Since 2001, SGD's have always been shipped "locked" from the internet and a user could call the manufacturer of their device and pay a small fee to have it unlocked. Usually about $50.
That capability has been removed with no explanation and causing months of letter writing campaigns and lobbying.
To read this statement from CMS is actually a slap in the face to all who have been suffering because of its implementation as well as all who have been trying to reverse the coverage rules. I urge you to dig a little but deeper and help make a change for those who are already locked inside their bodies. They shouldn't also be locked away from the world due to Medicare.

Tuesday, September 2, 2014

I Have Options. People With ALS Do Not.

It was pouring rain when I awoke this morning.

My early morning routine starts with a big pot of tea and my morning newspapers, read at the kitchen table as they were meant to be read.  It's a quiet time to read and learn and think that I've enjoyed since I was a child.  Real newspapers give me a good start to my day.

The papers had not been at the foot of the driveway for long when I went out to retrieve them in the dark this morning, and they were in a plastic bag.  When I picked the bag up, I knew today was not getting off to a great start.  The bag was heavy.  Two hours later the papers are still hanging on a clothes rack in front of a fan as I try to get them dry enough to read.  So much for my morning routine.

I am fortunate to have the digital option for my morning papers.  I have a good internet connection and can read the news that is drying in the laundry room.  If need be, I can pay to get behind the paywall for an interesting story, and I can even forward news to friends or write a blog post on something.  I have really good options.

Online I read a Washington Post story of Steve Gleason that was about much more than Steve Gleason.  It was about living a full and meaningful life with the assistance of technology, including the same internet technology and text editor that I use to write this blog.

Then I read a statement in the same newspaper from Medicare CMS about the devices that they are supplying to people with ALS.

A spokesman for the Centers for Medicare and Medicaid Services said last week that coverage rules relating to speech-generating devices are being reviewed but that no change or reinterpretation will reduce access for ALS patients who need them.
“We are committed to ensure that beneficiaries have access to needed technologies to improve their quality of life, including the coverage of speech-generating devices for individuals with a severe speech impairment,” the spokesman, Aaron Albright, said via e-mail. “Medicare has covered speech-generating devices since 2001, which greatly improve the day-to-day lives of many beneficiaries. This policy has not changed, nor have we proposed this coverage to change. With the rapidly evolving technology in this area, our Medicare payment contractors are currently undergoing a product review of available speech-generating devices to ensure that they comply with our coverage rules and the Medicare law. CMS extended this review until Dec. 1, 2014 to ensure that we [are] able to review and address issues that stakeholders have ... raised, including the ALS community’s desire for beneficiaries to have access to devices with expanded functionality.”

Say what?  Is this good news?  Nope.  Read again.  Read again.  Read again. Dad would say that this was written by a Philadelphia lawyer.  Read again.

CMS is supplying speech-generating devices.  They will generate speech.  They won't let you do anything else that requires "expanded functionality."  No internet.  No word processor.  No email.  And they'll make darned sure to uphold the rules so that speech-generating devices are as functional as the ones people got in 2001.

People with ALS don't have options like the rest of us.  They can't even turn the pages of a newspaper, and those who have received their Medicare-supplied devices lately can't even read the Washington Post online or see this blog.

The internet is their lifeline.  It's not "expanded functionality."

If there were ever an issue of respecting life in the United States, this is it.  We have vibrant, bright people who want to live their difficult lives to the fullest.  Boat-anchor speech-generating-devices that are "dumbed down" to prevent communication beyond speech in a room are simply morally wrong and a bad business decision on the part of CMS.  Why is the government purchasing technology with locks and blocks that is more expensive in the long run?

I'm grateful that I had the option this morning to jump online and read and give my two cents.  Doesn't everyone with ALS deserve as much?